In Allergy Diagnosis Pt. 1, you learned about our journey to a corn diagnosis. I thought the diagnosis was the destination. I thought that once we had that confirmation, things would be easier. Little did I know, the diagnosis was just the first mile of a cross country road trip.
We knew we needed to avoid corn and corn derivatives. We knew we needed to read ingredient labels. We knew we needed to make more things from scratch. We knew we were on a long, arduous journey of relearning our cooking skills. So that’s what we did. We bought more fresh produce from the grocery store, we learned how to make bread, we shopped from the “allergy friendly” aisle, and health food stores. We had some success. Josiah was feeling better most days, but his reactions were still happening frequently. The blessing, however, was that we were able to distinguish his reactions very clearly now that we had removed so much corn from his diet.
We started sifting through the things that were still causing reactions. We had to remove all boxed cereal because the fortified vitamins added to most (all?) cereals are usually contaminated with corn. We noticed that he was reacting to enriched all purpose flour. Yup, the “enriching” process is corny. Then he started having issues with the big brand cane sugar we had been using. That brand processes confectioner’s sugar on the same lines/same plant as their cane sugar. Guess what keeps confectioner’s sugar from clumping…you’ve got it! Cornstarch. Then the whole wheat, not enriched, flour caused problems too. We realized that many places that package flour also package cornmeal and cornstarch. Eventually we discovered that store-bought produce, meat, and dairy were unsafe for Josiah. Produce is an issue because of the preservatives, waxes, and sprays used to keep the food fresh and pretty during transport. Meats are usually packaged with soaker pads and/or in styrofoam, both of which have corn in their production processes, not to mention the washes used in butchering are usually a corn-derived wash. The vitamin D added to most commercial dairy is usually carried in an oil…more than likely a corn oil. We quickly understood that this allergy was much more than just ingredient lists. We were dealing with a sensitivity to miniscule, trace amounts of corn present in items by cross contamination or processing.
So we sourced a specialty, ancient wheat, flour that has less cross contamination risk. We tried different brands of cane sugar until we found one that worked for him. We bought locally grown produce. We stumbled upon a local dairy that bottles their own milk yards away from the pastures their cows live in AND they deliver to our front door! All the while, I continued referencing the corn allergy facebook group and the Corn Allergy Girl blog for ideas on brands or foods that others had been able to tolerate. We were FINALLY getting a handle on this new diet. We were, finally, in a place where Josiah was having more days in a row without a reaction. We can do this! We’ve got this!
Wait…where did that rash come from? He hasn’t eaten in hours. Why did he have trouble breathing in Walgreens while, ironically, waiting for an epi pen prescription? It became apparent that this allergy was more than just foods and diet. The environmental exposure to corn products was something we hadn’t considered and were a bit blindsided by. We narrowed the random, mysterious rashes to polyester. After laying on a polyester-filled pillow for 45 minutes, Josiah had a rash that covered his face and neck. After removing that pillow from his bed and stuffing a cotton pillowcase with cotton towels, the rash disappeared within 20 minutes. His gymnastics uniform gave him a rash during gymnastics competitions. So, we replaced all polyester in his closet and bed. We purchased a down mattress for each of the boys, purged all of their clothes to keep just cotton (or majority cotton) items, and started pulling up all the carpet in our house. (Yes, carpeting and the padding are frequently corn products).
We also turned our attention to the airborne aspect of his allergy. (The picture in front of the corn pit was prior to realizing the airborne reactions!) We learned that many cleaning products contain disinfectants that are produced with corn. Hand sanitizers contain ethyl alcohol that is distilled in corn. (We realized this when his gymnastics coach used hand sanitizer right before spotting him and his face and eyes swelled up.) Fragrances of candles, scented waxes, air fresheners, are, basically always, carried in a corn oil. Personal care products like lotion, toothpaste, body washes, etc all have corn derived ingredients. We switched our laundry detergent, dishwasher detergent, hand soaps, toothpaste, shampoos, and cleaning products. I got rid of my beloved scented wax collection. Then we also got Josiah an n95 mask to wear when he goes into public places that may have any of those items listed above. He didn’t (and doesn’t) always need to wear it, but there’s never a way to predict when he’d be exposed, so his mask got put in his go-bag with his epi-pen and goes everywhere he goes.
Then one night, the boys were all lying on each other’s beds watching TV. Josiah decided to lay on Jedi’s bed. Jedi, being 4, still had a waterproof protector on his mattress (that is 100% polyester and since it wasn’t on Josiah’s bed, I made the mistake of thinking it would be ok). About 30 minutes after watching TV, Josiah came downstairs with a full body rash and abdominal cramps. We gave him compounded benadryl and kept an eye on him. His rash got better, but the cramps got worse. It got to the point where he couldn’t stand up straight. I knew that anaphylaxis could be more than just airway issues, so I was starting to worry and text my sister in law about whether or not we should epi. Then he rushed to the bathroom to vomit. I knew it was time for the Epi-pen, but still second guessed myself. A few seconds later, he said he felt like he was breathing through a straw, all that doubt went out the window. We used the Epi-pen and in less than 10 seconds, Josiah got color back in his face, he could stand up straight without the cramps, and felt like his breathing was easier. We bundled up and headed into the ER (less than a 5 minute drive from our house) with our second Epi-pen ready.
Once we arrived at the ER, they took us back immediately. The doctor and nurses were amazingly helpful. They weren’t overly aware of all that a corn allergy entails, but they were very open to working with us to find the correct combination of steroids and antihistamines that Josiah can have. I think the poor doctor and nurse called the pharmacy no less than a dozen times checking on ingredients for different medications. Finally, they found a combination that worked and I confirmed that other corn allergic people had used them during their ER visits as well. Thank the Lord, Josiah did not have a rebound reaction and after staying for observation for a few hours, we were able to go home safely.
That night changed our outlook on this allergy. Until that night, we were dealing with a very uncomfortable, but seemingly non-life-threatening, allergy. However, knowing that your child’s life was saved by just a fraction of a milligram of liquid, somehow changes the way you look at things. We always knew we had to advocate for him. We always knew we wanted him to live in comfort and not constant distress. We always knew changing his diet was for his well-being. But, knowing that avoiding corn isn’t just about comfort, it’s about life and death…it weighs on you, as a parent. We know that we serve a mighty God and that His plan for Josiah is one of prosperity, not harm. We know that we can rest on His promises of protection. Those things give us comfort and peace, but I cannot lie to you, the anxiety produced by this allergy is something beyond what I thought I could handle. Since Josiah’s diagnosis, we’ve discovered that Jason and Jedi are also reactive to corn. One week, in the near future, I’ll blog about how we figured that out. But, until then the last thing I’ll leave you with is this: It is by God’s grace alone that we navigate this allergy with (albeit tentative) confidence.
Abundantly Blessed Life 